Cytomegolovirus (CMV) is a type of herpes virus that can affect just about any organ and can cause a variety of infections. Typically, CMV is passed from one person to another through close contact. It is especially prevalent in persons whose body systems are immune suppressed.

About 95% of the American population is CMV positive, meaning that at some point in their lives they have contracted the virus. Once contracted, the virus stays in the body for the rest of one’s life. If you have ever had the chicken pox or the shingles, you are CMV positive but there are other related illnesses.

My donor was CMV positive. Somehow, I was CMV negative. This condition did not become known to me until after the transplant.

Recently, I attended a meeting of transplant recipients and was shocked how many of the recipients had battled with the CMV virus. These were not just heart transplant recipients but recipients of other organs.

The possibility of a CMV infection was not described in the Tampa General patient’s guide but was mentioned in the Columbia Presbyterian guide.

At one visit to Columbia Pres, I witnessed how CMV was treated. Basically, the newly infected patient receives and intravenous feed for between 5 and 8 hours at the hospital. The procedure is administered weekly for eight weeks and then every other week for eight weeks.

The medicine is called Ganciclovir or more commonly Cytovene. In addition to the intravenous feed, patients also take an oral medication called Valcyte. I was prescribed 900 milograms twice a day. At some point, the CMV was deemed under control and the intravenous medicine and the oral medicine both halted.

When the shingles appeared on my right back in the Summer of 2010, it was a signal that the virus was active again. Because I was in so much spinal pain from the aspergillosis infection, this fact seemed to get lost in the mix.

Several months later while testing for a pulmonary embolism and the condition of my depleted gall bladder was underway, my white blood cell count was awry. While that is just one of the symptoms of CMV, a red flag went up at Albany Medical Center. I was again given the intravenous feed but this time it was around the clock for two straight weeks.

At one point, I received two units of blood in a transfusion. I honestly do not know why that happened. In any case, I am now back on the high dosage of Valcyte.

Three weeks ago, TGH thought blood tests showed the virus to be receding. However, the day before I left for Albany, the same blood test showed the condition was gaining momentum even though I was taking 1800 mgs per day. Two days ago, I had a blood draw in Albany and the CMV is still going strong. I am beginning to think I will have to go for some concentrated intravenous cytovene feeds. This is one stubborn virus,

Acording to the Cleveland Clinic, the most common symptoms of CMV are:

Low white blood cell count (leucopenia)

Fever above 101

Muscle weakness

Arthritis-like pain in knees, hips etc.

Fatigue

Mental confusion ( Suzanne says I did not need this virus to attain that condition)

Shortness of breath

Blurry vision – CMV often infects one eye and then the other

Blood in stool samples

Nausea, vomiting, diarrhea

Stomach or colon infection

Seizures, headaches, CMV encephalitis or brain infection (who knows?)

Nerve damage

If you are taking steroids and other transplantn medications a temperature of 101 is very high.

There is no cure for CMV. Treatments can cause it to become dormant but the virus may become active at any time. Because the symptoms mimic so many other possible problems, it is difficult to diagnose. Urine and sputum samples are the best way to determine the condition. A biopsy of the organ can also determine the existence of the virus.

In my opinion, this virus is the cause of many of my issues which were once attributed to the aspergillosis. There is not one condition on the list of symptoms that I have not experienced except brain infection – I hope!

The battles with loss of appetite, neuropathy, myopathy and low blood cell counts are ongoing. There is not much that can be done except talk to your cardiologist and see if an intravenous feed would help. I am about there. I would say that about 80% of the transplant recipients at the meeting in Tampa had confronted the CMV virus. They were all quite knowledgeable.

Again, I am not a physician, just a patient. My cardiologist let it slip that patients who read can be dangerous! For me, being well-read and dangerous works better than being disengaged.

I have been having gi issues recently and following an EGD and biopsy my heart transplant team advised that my CMV was active today Friday nov 30, 2012 I am being admitted either tonite or tomorrow for treatment. I have hope in my team and also will stay well informed. I will provide updates as we Go.
Steve.
Heart 9-6-2010.